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Idea Description
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Innovation 'Elevator Pitch':
The Dementia Dekh Bhaal programme invests in South Asian carers of people with dementia. We do this by identifying, reaching out and empowering carers to normalise the conversations around dementia and become leaders in influencing change.
Overview of Innovation:
‘Dementia Dekh Bhaal’, meaning ‘to care for dementia’, was set up by tide - together in dementia everyday. Tide is a social movement led by carers for carers and campaigns to have better recognition and support for carers, enabling them to have a voice to speak up and influence change. This Project Outcome Report evaluates the success of Dementia Dekh Bhaal in its delivery as commissioned by the Heywood Middleton and Rochdale Clinical Commissioning Group (HMR CCG) and Rochdale Borough Council (RBC).

In 2015 the Life Story Network was commissioned by the CCG and RBC to review their dementia offer. The report ‘Strategic Review of Local Dementia Support’ was submitted in March 2016 and included a section on the needs of BAME communities, with a recommendation that commissioners should:

Invest in the development of a sustainable programme of work with the local BME communities to identify BME Community Champions to establish a coordinated model of education, advice, help and support for their local communities, building on the good practice from Liverpool and Bradford. It is particularly important to ensure that you engage and develop local community champions’.

In 2018 the CCG and the Council commissioned the Dementia Dekh Bhaal project to address the needs of South Asian carers. Specifically, the three strategic aims of the project were:

1. Develop and deliver a training package for professionals to understand more about the approaches to take for BAME people with dementia and their carers to provide more culturally competent care.

2. Campaign to increase awareness within the community, general public and public-sector staff around BAME dementia including a suite of material to support local carers in campaigning work and provide them with the knowledge, skills and confidence to do this with impact.

3. the power of stories to change perceptions including the creation of a suite of videos capturing the experiences of people with dementia and their carers.
Stage of Development:
Market ready and adopted - Fully proven, commercially deployable, market ready and already adopted in some areas (in a different region or sector)
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Innovation 'Elevator Pitch':
Tide is a social movement led by carers of people with dementia to have a voice in society.  Tide identifies and develops carers of people with dementia to support long term co-production and involvement with a range of health care providers.
Overview of Innovation:
Together In Dementia Everyday is a social movement led by carers of people with dementia. Tide enables carers and former carers to have a powerful collective voice, using their lived experience to raise awareness of their unique needs, have their rights respected and be empowered to influence policy, practice and research at all levels. Tide works with partners to ensure carers have a say and supports co-production at local, regional and national levels.

The Tide development programe creates trained and confident carers for health and social care to draw on as experts by experience to participate in local/regional planning forums and service reviews and to contribute to joint training. Carers can advise on and participate in research in health and social care, ensuring that the systems measure what really matters.

We have recruited and developed large co-horts of carers in the North of England who support a range of co-production activities with our healthcare partners.  Recently carers were invited to have a say in Westminister on the All Party Parlimentary Group on Dementia.

Getting involved also enables carers to influence change and shape their local communities by influencing how services are designed and delivered. Having a voice, understanding the system and being able to influence it improves carers’ well-being, enabling them to be strong advocates and care for longer

A person-centred approach must include involving carers as equal partners from the beginning; they know the person with dementia better than anyone else. Using their lived experience to inform policy and practice helps to improve services, ensures better outcomes for people with dementia, improves continuity of care, reduces carer breakdown and helps staff support people better. Carers represent 42% of the dementia care workforce so are key resources in achieving the shift from hospital to community.  Tide works with partners to give carers a meaningful say on service provision.

We would like to extend Tide into the Midlands - recruiting and developing carers of people with dementia and supporting them to have meaningful input into healthcare decisions at every level.

Examples of how carers have used Tide to have a say in other areas of the UK can be found here.

The Tide evaluation can also be found here.

By working with Tide we can enable more carers of people with dementia to have a seat at the decision making table and create a lasting partnership with skilled committed family carers.
Stage of Development:
Market ready and adopted - Fully proven, commercially deployable, market ready and already adopted in some areas (in a different region or sector)
WMAHSN priorities and themes addressed: 
Mental Health: recovery, crisis and prevention / Long term conditions: a whole system, person-centred approach / Wellness and prevention of illness / Education, training and future workforce / Person centred care
Benefit to NHS:
Carers of people with dementia have a unique experience of caring. This includes coping with the unpredictable nature of the condition and the emotional and psychological impact of grieving for the person they have known as a result of the cognitive decline of the person they are caring for;
 
Carers want to have their own voice and not be seen solely as adjuncts to those they are caring for. They should be recognised as experts by experience and helped to gain the knowledge, skills and confidence to influence and advocate for positive system change
 
There are 700,000 carers of people with dementia across the UK, with many feeling socially isolated and lonely as a result of their caring roles;
They make up the largest workforce (44%) in dementia, saving the care economy £11.6bn a year, but this is not recognised, valued nor respected by policy makers, professionals nor society as a whole;
 
Our Carer Development Programme will create a cohort of trained and confident carers for health and social care to draw on as experts by experience to participate in local/regional planning forums and service reviews and to contribute to joint training. Carers can advise on and participate in research in health and social care, ensuring that systems measure what really matters.
 
Giving carers a voice, improving their knowledge, skills and confidence and creating opportunities to get involved will help them lead healthy and independent lives. Research has clearly shown the adverse impact of caring on the health of those looking after people with dementia. Getting involved also enables carers to influence change and shape their local communities by influencing how services are designed and delivered. Having a voice, understanding the system and being able to influence it improve carers’ well-being, enabling them to be strong advocates and care for longer
 
A person-centred approach must include involving carers as equal partners from the beginning; they know the person with dementia better than anyone else. Using their lived experience to inform policy and practice helps to improve services, ensures better outcomes for people with dementia, improves continuity of care, reduces carer breakdown and helps staff support people better.
 
 
Initial Review Rating
3.80 (3 ratings)
Benefit to WM population:
The UK has a growing and ageing population, with increasing numbers of dementia diagnoses, there are 850,000 people estimated to be living with dementia in the UK, this number is set to rise to one million in 2025. Additionally, one in five people will experience depression sometime in their life and the prevalence of delirium in people on medical wards in hospital is about 20% to 30% and can be much higher in intensive care units.

If you live with dementia, depression or delirium it can sometimes be really difficult to express what is important to you and why. The NHS recognises that it is incredibly important that people living with the 3Ds receive person centred, and individualised care, particularly as these can offer incorporated protected characteristics. 
 
 
Carers don’t apply for the job. In learning from scratch, they develop a wealth of knowledge and expertise about the person they care for. Not all carers are comfortable in the role. Tide helps carers articulate this and helps professionals providing care and support to understand this too.

Our Carers Development Programme increases carers’ confidence, knowledge and skills, validates their expertise and enables them to speak up to influence change. Modules include ‘Maze Runner’ – helping carers to find their way through the health and social care system, policy and legislation and to understand their rights. Tide helps carers channel their anger and frustration into constructive action so that they feel that they are making a contribution and are valued by society.

“I am treated with dignity and respect…my voice is heard and listened to”

Working in partnership with people and building on their strengths and abilities require more than conversations with professionals through individual consultations. We need to harness carers’ collective voices to talk to and influence the system, policies and processes.

Tide connects carers together in a network, helping reduce isolation, giving them assurance that they are not alone and providing opportunities to get involved at whatever level suits them; this can be through an e-mail consultation, a letter to their MP, speaking at events, research or local, regional and national planning/advisory groups.
Current and planned activity: 
We currently operate in Northern England, Wales, Scotland and Northern Ireland and have over 600 members.

We propose working to recruit 50 carers of people with dementia in the West Midlands, providing them with 10 training and development modules and supporting them to have 100 opportuntities to influence.  This ranges from involvement on stakeholder groups, supporting CCG recruitment, co-producing projects, speaking at events, co-developing training and supporting reasearch.

We will then work with carers and partners to evaluate their input and to build long term connections so the voice of carers can be a resource that supports co-production in the long term.  Through the process we look to build stronger links between carers and the organisations involved to support robust co-production.

We know carers want to get involved with co-production and we would like to work with organisations in the West Midlands to give carers a worthwhile say on service provision.
What is the intellectual property status of your innovation?:
It belongs to Life Story Network CIC
Return on Investment (£ Value): 
medium
Return on Investment (Timescale): 
0-6 mon
Ease of scalability: 
Simple
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Innovation 'Elevator Pitch':
Meeting Centres are a local community driven, evidence based resource for people with dementia and family carers. enabling people and families affected by dementia to build resilience for the longer-term.
 
Overview of Innovation:
Meeting Centres were first developed in the Netherlands 25 years ago. Currently, there are 150 Dutch centres with a national network that local groups can utilise. There is good evidence both from Dutch research and recent UK research (www.meetingdem.eu) that people attending Meeting Centres experience better self-esteem, greater feelings of happiness and sense of belonging than those who don’t attend.  Recently completed translational research to implement Meeting Centres in the UK, Italy and Poland led to two successful Meeting Centre demonstrator sites being set up in the West Midlands: Leominster in Herefordshire and Droitwich Spa in Worcestershire. A new grant from National Lottery provides the opportunity to support new Meeting Centres and we are looking for people to set up new Meeting Centres.
 
The Dutch have a well-developed community process for developing new Meeting Centres that engages all local stakeholders in both the local development and longer-term implementation thus promoting local community engagement across health, social care and community groups.
At the heart of each Meeting Centre is a social club where people meet to have fun, talk to others and get help that focusses on what they need. A team of staff and volunteers trained in the Meeting Centre ethos provide an enjoyable and flexible programme for both the person with dementia and their family carers. The social clubs meet 3 days per week for 15 to 20 members per day.  Family carers get assistance with practical and emotional issues, as well as being able to contribute to social club activities. This can all help reduce social isolation and build resilience.

All activities are designed to help people adapt to the challenges that living with dementia can bring. This involves a chance to get together socially, to be creative, to get active and to share lunch. Everyone brings their skills and talents to the Meeting Centre and the programme is driven by what people want to do. People attend as little or as often as they need.

A diagnosis of dementia is a huge challenge to come to terms with. If people make good emotional, social and practical adjustment to dementia following diagnosis, then it is likely that they will experience fewer distressing symptoms later and will be able to live at home for longer with a better quality of life for them and their families.
 
Stage of Development:
Market ready and adopted - Fully proven, commercially deployable, market ready and already adopted in some areas (in a different region or sector)
WMAHSN priorities and themes addressed: 
Long term conditions: a whole system, person-centred approach / Innovation and adoption / Person centred care
Benefit to NHS:
Dementia is a key priority for both NHS England and the Government. In February 2015 the Prime Minister launched his Challenge on Dementia 2020, which set out to build on the achievements of the Prime Minister’s Challenge on Dementia 2012-2015. There are four key aspiration and this is the where Meeting Centres fill the gap ‘Every person diagnosed with dementia having meaningful care following their diagnosis.’ In terms of the West Midlands
 
In the Dutch studies and the MeetingDem project (www.meetingdem.eu) it was found that those who attended most regularly showed fewer of the more distressing symptoms of dementia and a greater feeling of support. Family carers also experience less burden and feel better able to cope. People with dementia and carers report high levels of satisfaction with the programme, seeing it as an important way of keeping active and feeling supported. In the Dutch studies it was found that attending Meeting Centres can extend the length of time before admission to care homes.
Initial Review Rating
4.20 (2 ratings)
Benefit to WM population:
There are over 73,000 people living with dementia in the West Midlands (https://www.uhb.nhs.uk/dementia-facts-and-figures.htm ).  Dementia is a priority under a number of the West Midlands STP areas including Herefordshire and Worcestershire  which states that, ‘Our strategy focuses on people and patients so that every person with dementia, their carers and families have access to and receive compassionate care and support not only before diagnosis but after diagnosis and through to end of life.’  So far over 250 people affected by dementia have benefitted from attending Droitwich Spa and Leominster Meeting Centres. The cross-community information meetings, initiative and advisory groups as well as linkage with dementia friendly communities has raised the profile the profile of dementia in the communities and as a result reduced stigma. Aside from Droitwich Spa and Leominster there is a Meeting Centre in Ross on Wye (Herefordshire) and a great deal of interest from across the West Midlands, including Birmingham, Redditch, Worcester and Hereford. This will mean that the benefit to the WM population will increase in the future – see below.
Current and planned activity: 
The Association for Dementia Studies (ADS) at the University of Worcester has been awarded a National Lottery grant from the Big Lottery Fund - The UK Meeting Centre Support Programme. The project will run from 1st Sept 2018 to 31st August 2021. The aim is to help establish new Meeting Centres in different parts of the UK to work with their communities to support people and families directly affected by dementia.  In addition there will be further evaluation of the Droitwich Spa and Leominster demonstrator sites and the development of a toolkit for other Meeting Centres to self-evaluate in terms of benefits and cost-effectiveness. 
If you would like to set up a Meeting Centre we can support you with  this.
You can find out more by visiting
https://www.worcester.ac.uk/discover/uk-meeting-centres-support-programme.html  and https://www.worc.ac.uk/discover/meetingdem-jpnd.html  or emailing meetingcentres@worc.ac.uk  or reading the flyers attached below.
 
What is the intellectual property status of your innovation?:
The Meeting Centre concept has been develope by Professor Rose-Marie Droes at the  VUmc, Amsterdam see www.meetingdem.eu 
Return on Investment (£ Value): 
N/A
Return on Investment (Timescale): 
N/A
Ease of scalability: 
4
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Innovation 'Elevator Pitch':
Life Echo is a therapeutic personal phonic map of patients positive memories to reconfirm and generate memory management and interaction and how they can approach death.
 
Overview of Innovation:
Wiggan has discovered the possibilities that phonic recordings offer social care and Life Echo could offer alternatives within therapy and the skills of hearing that can address deep emotional and mental struggles.
 
Life Echo will address some of the issues relating to dementia and bereavement. (Primarily in first stages, then into other areas) and that Life Echo will explore the impact of sound on mental and emotional wellbeing. 

Previous activity has been building the project on the notion that hearing is one of the last senses to leave when a patient is terminally ill, this could possibly change how people interact with their own memories and how they can approach death.
 
This first stage of the project had shown it has great potential to become part of the service provision in end of life care and could be rolled out beyond the local area to become citywide and possible a regional or national project.
 
Positive memory trigger points with individuals receiving end of life and palliative care at the John Taylor Hospice in Birmingham and early sufferers of dementia to create ‘Life Echoes’ or personal phonic maps create this work.
 
The process encourages patients to reconfirm or establish memory routes, generating deeper, more intensive memory emersion through sound recall.
 
Life Echo is the sound of patients positive memories, as they consider an age or time period that has a positive significance for them, for each person this will be different and unique.
 
The Life Echo is an experience, alone or with family/ carer/staff. It is not a sound track of sound effects, but an abstract, therapeutic sound narrative based on the data shared by the patient.
 
 
This programme impacts upon end of life care and enhances the possibilities of ‘dying well’, it leaves a tool for the participant, a legacy for the family and potentially offers a process to delay the early on set of dementia.
 
Life Echo has the potential to become part of the service provision in end of life and dementia care. 

Life Echo is at inception/ R&D phase, so measurement guidelines are not yet fully formed. Anecdotal evidence, through film recordings and written documentation suggests that participants are extremely positive towards their experience however, this positivity needs to be formalised in order to establish clear frameworks for assessing success. 

The next step is to evaluate the impact of Life Echo on user, carer and family and develop a digital self perscription version
 
 
Stage of Development:
Evaluation stage - Representative model or prototype system developed and can be effectively evaluated
WMAHSN priorities and themes addressed: 
Mental Health: recovery, crisis and prevention / Long term conditions: a whole system, person-centred approach / Wellness and prevention of illness / Education, training and future workforce / Wealth creation / Clinical trials and evidence / Digital health / Innovation and adoption / Person centred care
Benefit to NHS:
 Our proof of concepts studies plus the 18 months of ongoing implementation of Life-Echo in the setting of our base West Midlands hospice have given us very considerable confidence to describe the followings features among those patients in whom increasing memory deficit is an pressing and relentlessly increasing daily problem.
  1. Promotes welfare benefit
[Increased and noted positive mood up-lift for the patient and more general care & welfare benefits]
 
  • For the patient : elevation of affect, pleasure and increased tranquility
 
  • For the carers : additional benefit and assistance to those directly managing their daily care, and more generally in improved mental accessibility of the patient towards close relatives and carers sharing their daily life
 
  1. Delivers financial benefit
  • Essentially in terms of increased quality time salvaged (due to the patient’s lighter affect and increased communicability) 
  • Reduced difficult times of wearisome management  (due to mental inaccessibility of the patient)
 
  1. Motivates the seeking out of further application areas and business
  • The Life-Echo business, small as it is, has over the last four years been approached by some twenty different potential users of the equipment and ideas in a truly impressive range of situations – schools, adult education, mental health therapy, relaxation for stressed children and adults in hospitals, prisons, detention centers as well as for well and healthy individuals in challenging and extreme circumstances.
 
For one reason of another [possibly because the technology is eminently affordable and flexible in design and because the fundamental idea of access to personal memory and imagination is so alluring] Life-Echo is overflowing this development possibilities. For those purchasing Life-Echo it is so easy to use in opening up new application areas. Indeed in situations like hospices and hospitals for these possible developments can readily be viewed as revenue generating.
Online Discussion Rating
5.00 (1 ratings)
Initial Review Rating
3.40 (1 ratings)
Benefit to WM population:
Presently our experience is in the palliative day-care setting, where even if this were to be the only application are, we would base the computation on exactly the three areas shown in detail above; and moreover these would need to be delivered by a system which costs in a Life-Echoist  at each of the three stages – mapping, creation, reproduction.
 
[Nevertheless, our present direction of technical development is for Life-Echo to be both self-derived and self-administered – which opens up the option for creation to be Life-Echoist –supported or even self-created.]
 
Simply applying to Life-Echo the epidemiology of dementia in the over 60’s population of West Midlands 
http://www.alzheimersresearchuk.org/about-dementia/facts-stats/10-things-you-need-to-know-about-prevalence/

and on the basis of the benefits described at A, above:
 
            Promotes welfare benefit :
  • Over 1.5 million people in the UK (West Midlands at 8.85% = 130,000) therefore, including both people with dementia and their carers, would potentially benefit from dementia treatments today.
 
Delivers financial benefit :
 
  • Per patient day using Life-Echo we estimate a conservative net financial benefit of £10.
 
Motivates the seeking out of further application areas and business: 
 
  • Per institution adopting Life-Echo per year we estimate a conservative ‘novel usage’ return to them of between  £2k and 20k per year.
 
If Life-Echo looked to monetarizing for its own return just 15% of this potential customer gain then for every 80-users that would be 15% of £((80*365*10) + (3*5,000)) = £46,000
[based on present situation of 80 users in 3 centres for a single year.]
 
This is the present base level (£46k p.a. 2016) – and we expect to increase this 10 fold in 1 year (£460k p.a. 2017) and 100 fold in the following 4 years (£4.6m p.a. 2021)
Current and planned activity: 
Life Echo is  being considered with the Q.E wellbeing team for the YPU Cancer Ward and Dementia Ward , who have seen the postive impact and change it can bring to patient and carer / staff prioritsed costings have limited thier engagment at this point . Anthony Cobley was championing the project to be at the Q.E. John Taylor hospice are a keen stakeholder as the porject started there and they are eager to see it develop. There are also other organisations waitng to run in part ir full programme . These are St.Andrew's Forensic , T.E.A Project in Sri Lanka , Cotteridge School, Newton Dee in Scotland ,SIFA, Ty Hafan ,CRISIS Birmigham and HMP Brimingham. (see supporting document for more details ). In terms of development support there is interest in its software translation potential from Microsoft and EnablediD. If successfull with this funding to develop a digital memory atlas and / or evaluation on patient / carer diginty , then these partners will be secured for next phase. 
 
What is the intellectual property status of your innovation?:
Life Echo as a name and logo is trademarked , however the copyright and patenting of IP , process etc are not yet completed but in progress right now. ( This is where guidance and support is requred .) I realise the extreme importance of this and do need to get that done , however this needs a £3000.00 injection now to get this status complete.
Return on Investment (£ Value): 
medium
Return on Investment (Timescale): 
2 years
Ease of scalability: 
Simple
Regional Scalability:
West Midlands Region

1. Via our four Life-Echoist Training Courses planned for 2018 at three different palliative care locations and University Venue: 
  • John Taylor Hospice
  • Myton Hospice, Leamington Spa
  • Compton Hospice, Wolverhampton
  • BCU, Well Being and Digital Health
Each will train eight Life-Echoists:

2.  Via the 2018 Life Echo Conference – December, 2018
 
3.  Via the excellent offices of WMAHSN
 
Other Parts of the UK

We are currently working in Wales with both Children’s Hospices:

Tŷ Gobaith, Conwy
Tŷ Hafan, Cardiff

With further discussion:

HMP BIRMNGHAM
CRISIS
SIFA FIRE SIDE 
Measures:
2 known areas of personal impact (preliminary medical & social history/psychological/physiological)
 
1. Patient’s short & long form: Enhancing function, promoting relationships & social participation & finding ways for those with dementia to enjoy life are the keys to successful occupational therapy intervention. Providing education for family, care providers & clients (as they are able to understand) & promoting the persons strengths will ensure that those with dementia & their care providers have the support needed to live life to its fullest

2. Carers/Staff: The medical & clinical background to these choices is explained more fully in our Measurement Notes for the LE-Corpus
 
This application is about Life-Echo as a health care intervention, particularly the patient with early dementia symptoms at home or in a residential/palliative care environment, along with carer(s) & medical professionals. Everything that follows here will therefore be directed to the needs & benefits of those 3 groups. However it is important to have in mind that Life-Echo already has authentication in its use from a range of other fields where its users & critics have made us aware of the depth of its effects & the impact it has had on them
 
Life-Echo moves the individual & motivates their behaviour & that is the common denominator of all that we have in growing corpus of our evidence. That corpus is held in a customised SQL database designed for linguistic analysis to extract sentiments & feelings across a psychological & physiological theoretical domain. Data is very carefully & painstakingly collected according to the framework (outlined in attached ‘Measures’ document). Moreover this is done in a way that as far as possible means that no recorded encounter with Life-Echo goes untapped for new or confirmatory insights into its workings
 
Full information on the measures to be used to gauge the success of Life Echo & how these assessments will be made are in the attached ‘Measures’ document
Adoption target:
Rejection Reason:
Needed to focus on one application.
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